Friday, March 12, 2010

Am I alone here?

This blog isn't intended to be a List of My Grievances, but lately I feel like that's what it's becoming. And I'm sorry for that. But, because I appreciate having a place to vent and because writing has become a sort of therapy for me, I feel like this is a good outlet. I apologize that often when something is weighing on my mind, my posts are long and not very organized. I'm sure they could be better if I put more time into them, but when something is bothering me I just need to get it out there: write about it and then move on. I promise that if you bear with me through this one, if you want I'll tell you about something really interesting when it's over. Like that time my dog ate four of her puppies. Or that time the cops interrupted a father's day celebration at my in-laws house because they were blowing stuff up...again.

Recently someone close to me, whom I've always considered a huge support, said some hurtful things about me regarding my health. I truly believe this person's intent was not to hurt me, and they certainly didn't plan on the things they said making their way back to me. But they did. One of the things that was particularly upsetting was when this person said they just don't think I'm as sick as I "claim to be". Not that it's the most atrocious thing that's ever been said about me, but it still stung a little and I'd like to explain some of the reasons why.

First of all, I don't "claim to be sick". In fact, I spent a great deal of my life trying to deny the fact that I have a terminal illness. It's only been very recently, and mainly through this blog, that I've been able to open up about having CF. Now, that's not to say that I try to hide my illness. It's not something I'm ashamed of, I simply don't feel the need to advertise it. It's not like I stop random people on the street to give them a rundown of my various physical ailments, or introduce myself  by saying "Hi, I'm Jenny. Oh, and I HAVE CF." Outside of my family members and you, here in Blog Land, there are only certain people that I actually discuss this disease with. As far as most people know, I'm "healthy". Although I have my moments, which I think we're all allowed to have, I usually maintain a very positive attitude about things.

Secondly, when I do get sick, I'd like to think I handle it with at least a little grace (again, with the exception of those few moments). I try not to complain. I don't pity myself, and I certainly don't ask others to pity me. In fact, the opposite is often true. When I start feeling run down, I'll push myself even harder and try to pretend that I feel good to prove that I'm capable of leading a "normal" life. (Before you chastise me, please know that I realize how ridiculous that is and that I'm working on it.) I've shown up to work on multiple occasions when I should have been home in bed trying to get well. Last fall, right before I was hospitalized, I had pneumonia and quite possibly swine flu (although I wasn't aware of either at the time) and I was still coming to work every day. Without complaining.

Besides having CF, I guess you could say I'm just unlucky in the health department. A couple years ago, I had recurring episodes of viral conjunctivitis (pink-eye, essentially) for several months. On another occasion, the infection in my body decided to manifest itself in one of my toes--I woke up one morning with a swollen, purply-red toe that was so sensitive that I couldn't wear a shoe for several days. Among other things, I had unexplained, heavy bleeding for most of my pregnancy. Then I got that spinal headache after labor. Just last week, I became so violently ill after eating at McDonalds, I was absolutely certain I had food poisoning. Random things like this have plauged my life, but again, I try not to complain. Sure, I use quite a bit of sarcasm to get through, but ultimately, I do pull through each trial and then I laugh about it later.

The things that were said have caused me to question a lot of things. Am I as positive as I try to be? Do I handle things as well as I thought? Do I complain more than I should? Do people think I "claim to be sick" for attention? Is opening up about my health a good thing if the people who don't understand this disease just think that I'm making up stories? Has anyone else had similar experiences or am I alone here?


  1. I have the same problem. Because I have been so healthy people don't think I'm really that sick. Most of my life I was ashamed of having cf. But that's mainly because of the way my parents were. And the sicker I got, the more they pushed me. When most people find out that I am sick their first response is "You're healthy as a horse" or "but you're the picture of healthy" I guess because I'm not 90 pounds and on oxygen being pushed around in a wheelchair then I'm not really sick. So they go on to say I'm just trying to get attention.

  2. Oh, I so hear you. CF is really an "invisible disease" - even people I know who are end-stage often look totally normal. I get told all the time that I "look just fine" - even when I am super, super sick.

    A great website to check out - I use the "spoon theory" all the time to explain my life to people.

    I have definitely had people like the one you mention, who just don't believe I'm as sick as I "think I am." Few things are more frustrating!

  3. I know this is a little different but we go through the same thing with Bills back. People tell me all the time they don't understand why he doesn't get a job, why doesn't he help around the house why doesn't he do this and that blah blah blah....

    People don't understand unless they have been in your shoes. They try to be sympathetic but some illness and injury poeple just can't wrap their heads around it until it happens to them. I don't wish Bills back issues on anyone and I'm sure you don't wich CF on anyone either, but untill they encounter the problem or something like it comments like that will always be made. SORRY!!!

  4. I am so sorry someone made you feel that way.... That is just terrible.... cf is a horrific illness, that many just dont understand... I have had people say rude things to me about my son, and I have and am trying to learn that yep I am just gonna educate everyone lol. I do think it is very very misunderstood, and it is unfortunate that people have to be so rude without even knowing what they are saying... Good for you to stand up for yourself and blog about it.... ***HUGS*** I have witnessed so many cfers lose there battle this year to this aweful illness, maybe she needs to add a whole bunch of blogging cfers to her friends list, she would quickly realize just how devastating this illness is, and then actually be able to appreciate your possitive attitude you have chosen to take with your life..


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